Peoples Forum
Sarah and Jayne have shared their useful outlooks on living with MDS. We have a really good, supportive online community going here, and all understand how important it is to get frequent CBC Blood tests. We all feel it has been good to be in touch with others tested with the Anaemia illness.
Even though it varies greatly and affects each of us differently, it still beats being isolated and worrying about the outcomes. The prognostic scoring system is becoming somewhat outdated now, considering the advancements in treatments and Anaemia diagnostics. Try not to let them demoralize you too much!
Although you didn’t receive a formal diagnosis of MDS until relatively recently, based on my own experience, I would speculate that many of us have been gradually experiencing a decline in our CBC levels, albeit symptomlessly, for several years before diagnosis. It may even remain undetectable in the bone marrow for a while. In my case, before I became ill, I experienced about 7 years of repeated cellulitis (skin infections) in the lower leg. Being me, I never went to the GP and, therefore, did not have any CBC exams during that time.
The MDS forum
Even when I was in the throes of many horrid Anaemia symptoms (pleural effusions, bone pain, fatigue, weight loss, enlarged spleen and liver) during what I now know was the CMML (MDS sub-type) “kicking off”, the bone marrow performed at that time did not reveal MDS. This only showed itself a year later on my 2nd bone marrow biopsy.
So, what I am trying to say is that you may have had MDS for longer than you think. This reassured me as I was in normal good health for most of that time!
My spleen is also enlarged, and bi-annual ultrasounds monitor it. Manual examination by the doctor is a bit prone to estimation. I also discovered that an enlarged spleen can lead to left shoulder pain through a referred nerve. So watch out for that!! Would you happen to know how large your spleen is currently? And is it giving you any pain?
What are your haemoglobin levels from the CBC report, as that can relate to fatigue?
I hope you are feeling less worried and will try to attend an MDS Forum, which you will see advertised on this website. There is one in London every September, and meeting other MDS patients and their families is a relief.
Best wishes
“MDS does not show up in the bone marrow until it reaches a certain stage” sounds sensible.
I, too, had pain when breathing deeply, even when my spleen was only about 14 cm. And I think that it presses on the diaphragm and somewhat reduces lung capacity. But I thought it might be a consequence of both lungs being full of fluid for several months nearly four years ago. Left shoulder pain is a known manifestation of an enlarged spleen—not just my theory!!
I met a doctor at one of the Patient Anaemia meetings who explained that the nerve to the spleen also connects to the left shoulder. The body cannot distinguish where the pain is coming from! I expect the CT scan to rule out lymphoma or any other nasties! I had one before my MDS was diagnosed when, in fact, nothing at all was diagnosed to explain the symptoms I mentioned. My spleen is steadily enlarging and is now 18cm – it has been 19.5 cm, so I guess it must fluctuate. The liver also seems slightly enlarged, but nobody seems bothered by it!
Finding a support system
After my CBC test, I felt very glad that my MDS was not yet affecting my red blood cells, as I know from other patients how debilitating the consequent fatigue is. HB is around 11-12—not bad for a woman—my platelets are around 75, WBC around 2.8, and nuts around 0.65. My “problem” is the monocyte count, which is just over 1 most of the time, which puts me into the MDS category of CMML.
When I first read about Anaemia, it gave a median survival rate of 12-24 months. At age 59, with a fit, healthy lifestyle and a mother who was 80 at the time and in great health, I was not a very happy person. That’s quite an understatement. I was very bitter, weepy and angry about it all. As long as I remain well, I now have come to some mental way of living with it. However, any little twinges, changes in my CBC Blood results, waiting for results of BM biopsies, etc., can still panic me. Still, overall, I am mentally better than I was. I am less anxious about things like the risk of infection and bleeding, as it has not turned out to be as bad as I thought it might.
I’ve replied elsewhere, but I’m sure there will be quite a few going to the meeting, and I hope you will find it helpful to go if you can.
Best wishes Chris
Hi Chris
The reason they always examine my lymph glands is that my only sibling (a sister) sadly died of secondary Hodgkin’s Lymphoma. This was in 198,6, and she was 24, although Hodgkins is rarely hereditary. I’m told that MDS Anaemia is unrelated to Hodgkin’s, either. Just bad luck, I suppose! My Mother had always been in excellent health until she first showed the early signs of PSP at 75. She was still working part-time as a volunteer.
My Grandfathers from both sides lived until they were 86 and 91, respectively, and never had any blood-related disease. My father is now 76 and regularly gets CBC blood tests. Thankfully, he is still in good health. Long may it continue.
I wonder if my work has caused my MDS and Anaemia as I have been manufacturing metal parts all my career. My first job from the 80s to the mid-90s involved a lot of metal dust in the atmosphere. In those days, various solvents were used without good health or safety. I did mention this to the consultant, and he said that there is thought to be a link between heavy metals and solvents
but it is impossible to say for sure whether that has contributed to my MDS.
Anyway, I returned to work today after 5 weeks off sick with stress due to my pending Anaemia diagnosis. It helped a lot to take my mind off things and return to normality. Although I am still not sleeping well, it is still early days. I have good and bad days when I struggle to keep positive, but I must overcome that.
Hope all is still well with you.
Regards